Engaging Patients in Research

What happens when you engage patients in research? That’s a question RWJF is exploring with grants to Sage Bionetworks and PatientsLikeMe to build online, open-source platforms that give patients the opportunity to contribute to and collaborate on research.

Sage Bionetworks’ BRIDGE platform will allow patients to share and track their health data and collaborate on research into diseases and health problems that matter most to them. Three research projects will be piloted on BRIDGE in the coming year, focusing on diabetes, Fanconi anemia and sleeping disorders.

PatientsLikeMe’s Open Research Exchange (ORE) will give researchers and patients a space to work together to develop health outcome measures that better reflect outcomes that are meaningful to patients. After several months building the ORE, PatientsLikeMe is now in testing mode, putting the platform through its paces. But it’s not just an academic exercise. PatientsLikeMe has recruited four researchers to pilot the ORE. These researchers will be providing feedback on the site while working with patients in the PatientsLikeMe network to develop and test an initial set of health outcome measures.

Historically, it’s been the researchers and providers who’ve collected and controlled the data that helps diagnose disease and develop treatments. Patients have largely been left to narrative recalls of what they’ve been experiencing and how they’ve been feeling. By drawing on patient wisdom eliciting patient goals and more effectively engaging patients in medical research, both projects will help researchers better understand diseases and open up important paths for the development of new therapies, leading to dramatic improvements in health.

For the ORE, the fact that we’ve got our first pilot users is truly a milestone—it means we’re that much closer to having patient-identified outcomes be the real definers and drivers of value in health care.

These stellar researchers are looking at some critical health problems that have either no established measures or have outdated measures that don’t meet patients’ needs.

For example, William Polonsky, PhD, CDE of the Behavioral Diabetes Institute, is developing a tool that will help researchers, doctors, and patients better understand how diabetes medications affect appetite. Currently, to see how well patients are managing their diabetes, you measure their Hemoglobin A1c—their blood sugar levels—and use that information to guide decisions about treatment, making adjustments to medicine and meal plans. But for patients, satiety is really important—it influences how well they eat, and how well they can control their blood sugar levels.

Another example: Thi Tranviet, MD and Phillippe Ravaud, MD, MSc., PhD., part of the METHODS research team in Paris, are using the ORE platform to develop a questionnaire designed to gather information from patients with multiple chronic diseases about their medications, exercise and diet. This information will help doctors know when treatment regimens become too burdensome for patients. For patients who are balancing and being treated for multiple chronic conditions, the ability to talk about their experience in a much more rigorous way and thus be able to really work with their care team to make decisions about the suite of treatments they are undergoing, is really powerful.

I’m eager to see how both of these projects unfold and to hear your thoughts on how we can better engage patients in research to make strides in health and health care improvement. Comment below to share your thoughts.

This commentary originally appeared on the RWJF Pioneering Ideas blog.